Ok, so I started off replying to a couple of posts and then I figured that instead of leaving huge comments on other people's posts I'd better just make one myself. I don't mean this to sound condescending to anyone, I'm sure lots of people know some of these things, but for those that don't I'd like to share my experiences.
I handle my HS pretty well usually and usually have fairly clear skin with the occasional small cyst popping up and then disappearing again. I've been diagnosed for a good few years now and before I was diagnosed I was told that the cysts were 'just swollen lymph nodes' - until one ballooned up to the size of a golfball under my arm, burst, and sent me to surgery. Since then, I've tried just about every small thing (no other surgeries) that the good old internet has suggested, so here's what works for me.
First of all, and this is the biggest one, I sweat. I discovered this one on my own when I joined a 24hour gym last October. I try to go 2/3 times a week either on the elliptical machine or weight training, but whatever you're doing all that really matters is that you're sweating. I'm sure you've found the little hard lumps in your skin that if you squeeze them a fairly solid white goo comes out [such a glamorous condition we have]. Well I find that these are the beginning of the cysts when my pores are clogging up. When I don't go to the gym for a week or more I start to get tons of these. I find that sweat-wicking clothing is good for this as well. I work in a hot and humid underground bar so wearing jeans and a cotton t-shirt at work all night I get very sweaty but then the sweat stays on my skin with the damp clothing clinging to me, which is about the worst thing that I can imagine for my HS. This is the best thing I do for myself and it obviously has a lot of benefits aside from HS, but I know that lots of people have very advanced HS and so working out is hard due to the pain. Someone has said to me before that they would try a steam room, which if you had the means to do so would likely help also, or you could try some very low impact exercises that can still get the blood flowing and get you sweaty like the plank exercise (no movement at all) or yoga. Just remember to shower immediately afterward to wash the sweat away from your pores. You honestly won't regret it. I just want to shout from the rooftops about sweat haha.
The other things I do are partly doctor recommended and partly google-learned.
I'm on a specific contraceptive pill (bear in mind that it will be ineffective as an actual contraceptive while you're taking anti-biotics) that contains an anti-progesterone element. This is used for women with PCOS which causes excessive/thick hair growth, the pill helps to thin body hair. I honestly have no idea if this helps, but since I was on the pill anyway, I figured I might as well try it. My doctor initially put me on the pill because they said that it would help my HS, but a normal contraceptive pill will NOT have any effect if it doesn't contain this element. I had to be the one to say this to my doctor and ask them to change my prescription.
My google-knowledge led me to find an anti-microbial wash for the affected areas. I had just been using an anti-biotic hand wash since my GP hadn't said anything about it, so when I found it I started using something called Hibiscrub (which I'm sure many people are aquainted with). It worked well but it can be drying so my dermatologists (when I finally saw one) changed me onto Dermol 500 which is a nice soft lotion/wash that is much more gentle. I actually use this on my face as well to get rid of my acne. This stuff is important because improper washing of these sweaty areas can lead to a secondary skin infection or even mould. Especially since we can't use normal deodorant, this will kill all the odour causing bacteria in the area and help you stay fresh.
Speaking of deodorant, obviously anti-persperants are the enemy as they clog the pores. I use a Crystal brand deodorant-only spray. You can also buy this as a crystal stick. Lush deodorant bars are good also with tea-tree and bicarbonate soda but if you have an open cyst they sting like a b****.
I don't shave anymore, as I'm sure most people have stopped doing also. I now use a men's electric shaver with an adjustable length to deal with body hair.
I take multivitamins with minerals as your body is pretty much constantly fighting an infection and so things like iron can be depleted. Whenever I get a bad cyst I get a cold. It's like clockwork. My immune system is too busy dealing with the cyst to fight off basic illnesses anymore so I always get rundown with a cold. An immuno boosting supplement may help also, but I haven't tried any so far.
That's about it. I've stocked up on cardigans and long sleeves to hide my scarred and hairy armpits and although most people seem to like flowy clothing, I've grown accustomed to tighter clothing to stop chaffing - likely why I have more groin than arm cysts due to my comfy jeans.
I hope this helps someone!
